Happy World Down syndrome Day!

Today is a day I likely would not celebrate or know much about if it were not for Elliott. Here is my recollection of June 28, 2016 - the day that destined Brad and I to celebrate WDSD – and so much more.

I was standing at the check in area of my office talking to my co-worker, J, telling her about my baby girl. It was the week prior when we learned that Elliott would have a cleft lip and likely cleft palate too. I had my brave face on as I told her about this baby girl growing inside my belly – omitting the birth defect my daughter would carry her whole life and rather delighting in telling her I was almost half way through my pregnancy. After all, it was just last year, when I told J about the baby I had lost. So the focus of this conversation was on the success of this pregnancy and not on the birth defect that I, myself, was still processing. 

I look down at my suddenly vibrating phone to see my OBGYN’s office calling. I was so thrilled to be sharing the news with my co-worker that I chose to let it go to voicemail.

After the conversation with J ended, I remembered the lab took my blood to run additional tests on Elliott. Cleft lips are typically not linked to other issues, but my Doctor wanted to make sure there was nothing else we needed to be prepared for. I walked into a nearby conference room, shut the door and listened to the voicemail. It was my Doctor. Not a staff member telling me all was fine, but my Doctor asking me to call her back. My morning sickness morphed into a grander sickness.

I call her back and pace the room as the rings persist. 

She answers, and asks “Hi, where are you?”
Me: “I’m at work.”
Dr: “Are you alone? Or can you get to a place where you have some privacy?”
Me: “... uh, I.. I am in a conference room with the door shut.”
Dr: “ok Aubrey, I received the blood test results and your baby girl tested positive for Trisomy 21.”
Me: “...what does that mean?”
Dr: “It means your baby has 3 copies of the 21st chromosome instead of 2. Which means your baby has Down syndrome?”
Me: “whaaa, uh wha, and what does that mean?”
Dr: “Well, it means your baby girl will likely be one of the happiest people you’ve ever met. It means she will likely hug you a lot. It also means she will take longer to learn and hit milestones.”
Me: {silence}
Dr: “Aubrey, what would you like to do?”
Me: “What do you mean?”
Dr: “With the pregnancy, what would you like to do?”
Me: “uh.. oh, you mean keep my baby?”
Dr: “Yes, or terminate?”
Me: “Oh no, I don’t want to terminate.”
Dr: “Ok then.”
Me: “So, what do we do now?”
Dr: “Nothing. We continue along, I will set you up with some specialists but other than that we just await and prepare for baby girls arrival.”
Me: “Ok.”
Dr: “I am here if you need me.”

*hang up*

I have often thought about this very moment of my life. Run it forwards and backwards in my head. After hanging up, sitting there, alone, in a conference room designed for thirty. A long, intimidating, wooden table with expensive chairs on the perimeter. I sat on the end and stared down the length of that table unsure of what to do next. The news of Elliott’s cleft changed the trajectory of our envisioned parenthood path but this news kicked us into a whole new dimension. I didn’t even know what Down syndrome was. I DIDN’T KNOW WHAT DOWN SYNDROME WAS.

It was a 5 minute phone call that changed the entire course of my life. Everything I thought I knew about my existence imploded inside my head as soon as I hung up that phone. It was as if I spent immense time and effort painting a beautiful image of my life and suddenly the canvas was blank.

As this is all happening, Brad is at Hobby airport awaiting to board a plane to Denver for a business trip. He was to return to Houston 3 days later. Do I call and tell him this life-altering news right before he travels 1,024 miles north to digest it on a plane, where no one can hide? Or do I keep this secret to myself only to explode on him in 3 days? Saving him the agony while working in Denver but having me carry my pain, along with our baby, alone.

I have to tell Brad. I have to tell him now. I call him.

Me: “Hey honey, are you around a lot of people?” – I attempted to act casual but he reads me quickly.
B: “yeaahhh... do I need to find some space?”
Me: “Yeah, I think you should.”
B: “...ok...”
{Pause as Brad walks to a more secluded area in Hobby}
B: “Ok, I’m alone.”
Me: “So I just got a call from Dr. C and it turns out our baby girl has Down syndrome. Or Trisomy 21, for another name. {PAUSE} But it’s going to be fine. She is our daughter and she was meant for us - we were meant for her. We can get through this together and it is going to be fine.”
B: {silence} {shock} {softly cries} “This was my biggest fear” he struggles to get out.
Me: “It was?! I don’t even really know what Down syndrome is.”
B: “yeah...not Down syndrome necessarily - a life changing condition, I mean.”
Me: “We are going to be fine. She is going to be fine. Everything is going to be ok, honey.”
B: “Do you want me to come home?”
Me: “..No, no. I think it’s fine. I’m sorry to tell you like this I just felt wrong keeping it from you until you got back. Plus, I wasn’t sure I could handle this news by myself.”
B: “I’m glad you told me now.”
Me: “Good. I wasn’t sure what to do. Also, Dr. C asked about terminating the pregnancy and I told her no, that this was our daughter. Do you feel any differently?”
B: {Brief pause} “No, no that was the right call. I agree with that.”
Me: “You are sure right?”
B: “Yes, definitely.”
Me: “Ok then. I knew where we both stood on abortion but never thought it would be something we needed to act, or actually not act, on. Geez.”
B: “Right, me neither.”
Me: “Ok, so I need to get back to work and you have to board a plane so... It’s all going to be ok. Really, it is.”
B: “I love you.”
Me: “I love you too. Let me know as you are taking off and as you land safely in Denver.”
B: “Will do, love.”

*hang up*

So here I am. Alone in this conference room; chaos and ignorance lurking on the outside of the closed door. How am I to emerge? My poker face is crap - always has been.

For courage, I keep feeding myself the line I fed Brad, “it’s all going to be fine.” I open the door, stone faced, and walk to my desk maybe 50 feet away. I log into my computer. Six seconds later I log out. I get up and walk to the elevators. I go down to the mall level and start walking mindlessly. I feel my body not like I normally do but as a vessel simply moving me, the passenger, about.

People are rushing by with places to go and missions to tackle, while my body drags, and my face paralyzed with shock. At that moment, I want to disappear; where no one can see my pain. To process this life-altering news without public speculation. I sit in an area of an adjacent building hoping the people rushing by will all be strangers. I hold my phone with a limp wrist and stare out the window. My mind is racing but empty simultaneously. I don’t know how to feel. Truly. So I feel it all at once.

How am I going to survive the next 3 days without Brad? We are literally the only two people in the world who can relate 100% on this news.

I call him back. My confidence shaken.

B: “hey.”
Me: “I don’t think you should go to Denver.”
B: “ok... I’m boarding now.”
Me: “I know, I’m sorry. But I can’t handle this shock for 3 days without the only other person it impacts. I think we should be together to process it all.”
B: “but you were so confident it would be fine.”
Me: “I still feel that way but I think we should be together.”
B: “oh gosh, ok well I am running all the Denver meetings. So what if I take this flight, get everything delegated to other folks while I’m in the air and then as soon as I land I fly right back?”
Me: “I guess. But can you just get off the plane now?”
B: “I don’t think I can do that. And I do need to get other folks to run the show. Let me see what I can do.”
Me: “ok, thanks.”

*hang up*

I get up from my hiding spot in plain view and walk back to my office. Still numb. Still feeling everything all at once.

I make a beeline for my manager’s office and see that she is in a meeting. Knowing I can’t barge in and crash it with “my baby has Down syndrome!!” I tap my peer on the shoulder and ask if he has a minute. He can immediately tell something is off and says “yeah, of course.” We walk into a nearby conference room. One wall is windows looking into the open concept office while the opposite wall is windows to the outside. You can guess where I faced.

I can feel my strength leaking like CO2 with every exhale so I get this out as fast as possible: “M, I can’t look at you or I will cry more. But I just learned that my baby girl - oh, it’s a girl by the way, has Down syndrome. Last week we learned she has a cleft lip. So I thought I was good but I’m not. I need to leave for the day but Y is in a meeting so can you tell her for me.”

A League of Their Own is one of my favorite movies. The rule a drunk Tom Hanks yells to one of the players as she is tearing up ...” there is no crying in baseball!” is a rule I apply in my professional life - “There is no crying at work!” M was the 2nd person I cried in front of at work - to be followed by 3, 4, maybe 12 more. I think I need a new rule.

M tells me “If anyone has this, it’s you and Brad.” And some other things I can’t remember but wish I could.

M walks me out to the floor, helping me to hide my face. Y’s office is open now – so instead of just leaving, we go in. She offers the same type of comfort M did but much more. Y has a granddaughter whom she adores with all her heart. speaks of often, and who happens to be disabled. Since there have been plenty of conversation recaps in this post already, I won’t re-live this whole scene… I cry. She comforts. I cry. I leave. You get the gist.

Brad text: 
“I just got off the plane. They think I’m crazy.”

My reply: 
“oh thank God. I’m leaving work. I will meet you at home.”

I left my office. Got in my car. Drove home. No radio. Just me and my mind.

I entered my house as if I didn’t live there. A visitor - unsure of where to go and how to behave. Do I sit? Do I stand? Should I ask for water? Thankfully, Brad saved me from myself and walked in a few minutes behind me. I greeted him, we embraced, and we cried. The rest of the evening was spent in this manner. Embracing. Crying. Me telling Brad that our baby girl would be fine and have a wonderful life; that we would be fine and have a wonderful life.

The next day, I called the Rise School of Houston, a reverse inclusion school that is a dream come true for the parent of a differently-abled child. As the phone rang, I repeated “don’t cry, don’t cry, don’t cry” to myself. A woman named Peggy answered the phone. I remember her name well. I said “hi, I just learned that my baby girl has Down syndrome and I wanted to inquire about her attending Rise”. Peggy didn’t skip a beat and in the most genuine and positive reaction said “Congratulations!! When was she born?”

Me: “Well, she is not due until November”
Peggy: “Ha ha, well OK! Let’s get you on the list and set you up on a tour”.

I love Peggy.

The end of the day June 29, 2016 was the death of my strength for quite some time. I carried Brad for these 36 hours or so and evidently that was all that I had in my tank. It was from this point onward, for months - maybe even a year, that Brad carried me. In the blink of an eye, we switched places - and I’m afraid he got the short end of the stick. He still carries me from time to time; I need him to. Brad is my gentle giant who doubles as a first responder when I can’t bare the weight of my own mind.

We think we have our lives planned - that we know how it will all play out. What will make us happy, where we will end up in our careers, the kind of person we will marry, how many kids we will have. The truth is, we don’t know any of this. We don’t know what we’re going to eat for dinner most days. At least, I don’t.

A phone call from my Doctor was the catalyst to my life’s trajectory turning 180 degrees. A blood test reveals my life as a mother will look extremely different than envisioned – frankly, like nothing I could’ve imagined.

I think about Ellie’s life and I drown in “what if’s?”.  I think about heart surgery, her hopefully getting the trach out, going to Rise, first experience with someone who will inevitably make her feel less than, what school will be like for her, will she have good friends, will she be bullied (oh Lord, help me – I don’t want to publicly yell at a child that isn’t my own but You know I will), will she learn to drive, living independently, going to a college program, will she ever feel what it’s like to fall in love?...*tear falls from my cheek* DROWNING.

I am unsure of Elliott’s life like I am unsure of the dinner menu.

So today, on World Down syndrome Day, I will simply celebrate my daughter instead of wondering what the path looks like. As it’s quite evident the path I’m on (the path we are all on) doesn’t have a map. No GPS. No smart phone to alert me of danger or tell me which turns to take up ahead.

The only thing I know for sure about this path is that I will advocate for Elliott. The day Ellie was born was the day I became a warrior. It’s my job to shout her worth, give her all the tools, support, and love available. It’s my job to protect, challenge and encourage her. I will let her know every day that she is strong, she is smart… she is capable and spectacular. The same thing I would do for any child of mine; whether they had 47 chromosomes or 46.   

If you are reading this, I have a favor to ask of you. Tell someone you know that today is World Down syndrome Day and ask not for their awareness - but for their acceptance. To get comfortable being a little uncomfortable around difference. After all, you each know someone with Ds and I hope that you will advocate for her right alongside me.

Until the nexT21,

Aubrey